I close my eyes

Wednesday I realized that I always close my eyes during my radiation treatments. So that day, I kept my eyes open.

I realized that closing my eyes was an almost instinctive thing, as though I were protecting my eyes. Which is silly for two reasons—first, the radiation isn’t aimed at my face. Second, even if it were, my eye lids wouldn’t keep it out anyway.

And yet I closed my eyes again yesterday and probably will for the remaining treatments.

I use the relative dark to feel my heartbeat and wait for the voice to tell me to “take a deep breath in and hold it.” I inhale through my nose (that’s the correct way for this deep inspirational breath) and expand my belly and rib cage up and out.

Then I count my heart beats as the machine makes a slight buzzing sound. I think that sound is on purpose, an auditory cue that yes, I’m getting radiated. I usually count to about 23 to 25, depending on my heart rate. The buzzing noise stops, the voice says “breath” and then the machine makes whirly noises as it’s moved to the second position. My eyes are still shut as I hear “take a deep breath and hold it” again, again I count my heart beats, listen to the buzzy noise until it stops, and I hear “breathe.” I exhale and open my eyes and that’s another day closer to being done with this part of my breast cancer treatment.

Nearly halfway through

I’ll have my 10th radiation treatment today. I learned earlier this week that the last five treatments are what’s called boosts. I’m not sure if I’m getting what’s described near the end of this page, or if it’s more like what’s described here. All I know for sure is that it will be once a day, and in a different room with a different machine and a different tech.

Speaking of techs, my current crew are great. They’re always upbeat and we end up laughing a lot as they get me all set up. Every day, I have to tell them my full name, my birthday and what's getting radiation. So I mix up the order, yesterday I used my full name (which sparked a discussion about maiden names as middle names), one time I told them my birthday and added in that it's still the day after Groundhog's Day, silly stuff like that. And every day I tell them that I did my darndest to wash off the Sharpie marks they draw on the tattoos (it’s true, I really do try) and every day they just laugh and draw them on again.

They told me after my second or third treatment that they really like having me at the end of the day because I’m upbeat. They get a lot of patients who are angry, and that’s hard for them. Personally, I’m cheering on the radiation because the whole point of these treatments is to kill any stray cancer cells in my breast.

Of course, the radiation is also killing good cells. That’s the downside for sure, well that and any damage to my heart, lungs or ribs that may occur. My skin is pinker now, no surprise there, and my nipple is sore. I tried to go without a bra one night last week (I have worn a bra 24x7 since the biopsy because it’s been too uncomfortable otherwise and I'm getting really tired of that). After an hour, I gave up because the chafing from my soft cotton t shirt was too much.

I’m getting slightly pink on my back. That also doesn’t surprise me. I’m pretty thin, especially on my torso, so I’m guessing the radiation is just passing on through. It’s not horrible, just stings like the most mild of sunburns.

And my left pectoral is getting tight. That too is pretty normal. When I saw the occupational specialist earlier this week for a lymphedema check, I mentioned it to her. She pointed out that all the cells are getting damaged which is why the pectoral gets tight.

Yesterday the fatigue hit pretty hard. I did a good challenging run yesterday morning, so I’d have been tired anyway. But this was different, it’s more like I ran out of gas. For someone like me who’s an energizer bunny, this is disconcerting even if it’s expected. I’m working from home today but not putting in my best work, that’s for sure.

I’ve also got compression sleeves on order. There’s a good chance I’ll need to go to the Philippines later this year and for flights over four hours, compression sleeves are recommended. They weren’t cheap (I went for patterns, not granny-style beige), but hopefully I’m easy on them and they last a long time.

Much to my surprise

The skin on my left breast is a little flushed, and my breast is a little swollen and tender. Also that fourth tattoo stung for hours which I totally did not expect.

While none of this is tremendously uncomfortable (think annoying instead of PAIN), I figured I'd have days, maybe weeks before I noticed anything.

Edited to add that I get two zaps. The first day had a lot of practice zaps.

One down, 19 to go

This is from one of my dearest
lifelong friends. I took her
with me today.

Since today was the first radiation treatment, it was also the longest. The tech spent some time getting me acquainted with the order of operations so to speak. Going forward, most appointments will take far less time, although I will always see the radiology oncologist on Mondays.

But for today, I got the drill on what to do and what to expect. I got changed into a hospital gown; while I had to take off everything from the waist up, I kept my lower half clothed and my shoes on. I did take off my Garmin watch. I’m pretty sure radiation wouldn’t be beneficial to my watch.

I had three techs in the radiation room with me getting me and the machine ready.

First, we practiced that deep inspiration breathing, then they dragged the sheet I was lying on a tiny bit each way to get me just so on the table, then marked me up a bit more with markers and left the room. I think they do the extra marking because the tattoos are so very tiny—the marks they made are very easy to see. Then they did the radiation treatment. I think there were a total of six zaps. I had to hold my breath, and on a couple of them they told me to let out just a bit of air. Oh and at the end (yes, after that first radiation treatment), I got a fourth tattoo on my breast. The tech who gave it to me said it’s a centering measurement which cracked me up because it’s definitely not centered on anything.

After that, I had my blood pressure and pulse checked—I suspect those get checked after the treatment so if you were nervous about the radiation, you’d be over that part and wouldn't have artificially high blood pressure. That's also when I met with Dr. H, my radiology oncologist, and she had some interesting information for me.

Remember that pleural effusion I mentioned in my last blog post? Well she tracked down every film, CT and MRI of me, including one I’d forgotten about from 2005 and it turns out that I had two pleural effusions then! She suspects this is just what my body does. I wondered if that’s what’s behind the symptoms of reactive airway disorder I’ve had for years.

I’m curious to see what if any side effects I experience. I’m really hoping my skin does well, and that I don’t end up with the soul sucking fatigue so many experience.

Next steps

I look forward to a couple of months from now when I have something other than breast cancer on my mind. Or at least something else that’s top of mind, even if this remains an ongoing thread in my life.

Yesterday I met with the radiology oncologist (RO) for the consult. During that appointment, we talked through what’s happened so far and I let her know that I was probably not going to take the endocrine meds my medical oncologist recommended. I thought that decision might influence what she recommended for my radiation treatment, and it did. Originally she’d been leaning toward 16 treatments and now I’ll have 20.

Then she did what she called mapping. I was on a flat (hard!) table with a CT scanner but not a typical one (couldn’t tell you what the difference is just know that it’s different because the RO told me that). She and the nurse put stickers on various places on my chest, then circled my left breast with a thin, flexible wire. Finally the nurse drew on me with a Sharpie to line everything up—the room has lasers sort of like laser levels you’d use at home instead of a plumb line. That way, my body is lined up exactly as it needs to be every time.

Because the cancer is in my left breast, my heart will be exposed to radiation which can be a Very Bad Thing. So I’ll need to do what’s called deep inspiration breath hold. Basically, when you take a deep breath using your ribs and not going just from the belly, that moves your heart just a little bit out of the way of the radiation. You can read about cancer-associated heart disease here.

Of course, I’m a snowflake so this may not be something that helps me. Years ago, I was diagnosed with what sounded like a heart murmur, but an echocardiogram showed that my heart is close to the wall of my chest. When my heart beats sometimes there’s an echo that sounds a lot like a murmur. So my heart may be too close to the wall of my chest to be helped by holding my breath. I'll find out more next week.

Anyway, I had a couple of CT scans, breathing normally. Then I had a scan where I had to do that deep inspiration breathing, and I held my breath for the whole scan. Once that was done, the nurse came in and gave me three teeny tiny (hardly worthy of the name) tattoos. Basically, they are each one dot—left side even with my breast and under my arm, on my breast bone, and right side even with my breast and under my arm. I will have to remember to mention them to my dermatologist when I have my next post-melanoma scan.

I did think of one additional question for my RO after we left. I have a small pleural effusion on the left lung, which of course is the side that will get the radiation. So I’ve called and left a message to mention that and see how/if that impacts treatment. More to come . . .

Now the RO is building the model for my treatment, and I should get my appointments (I hope) by tomorrow since we’re aiming to start on Monday.

More encouraging news

I’m back from my two follow up appointments today with my oncologist and my surgeon. I took the whole day off work, mostly because the appointments were not back to back, nor were they at the same location.

My friend made this for me.

I have pretty much all good news—because of the kind of breast cancer I have, I already knew that chemo wasn’t on the table.  It’s just not a treatment that works on hormone receptor positive breast cancers (or HR+ if you want to abbreviate). Well, OK, it could have been if the cancer had metastasized, but it didn’t.

Instead, the normal treatment is surgery (either lumpectomy or mastectomy plus sentinel node surgery) --> radiation --> estrogen blocking drugs for five to 10 years.

Broadly speaking, there are two categories of drugs for the estrogen blocking. Here’s information about both kinds from the breastcancer.org site:

Selective estrogen-receptor response modulators (SERMs): The best-known SERM is tamoxifen. Tamoxifen acts like estrogen and attaches to the receptors on the breast cancer cells, taking the place of real estrogen. As a result, the cells don’t receive the signal to grow. Tamoxifen can be used to treat both pre- and postmenopausal women. Tamoxifen can reduce the risk of breast cancer coming back by 40% to 50%, and it’s the one my medical oncologist recommended.

(This part is from me) Keep in mind that as a stand-alone statistic, that reduction rate sounds fantastic, but you need to know what your personal recurrence rate might be. By all accounts, I’m in a low risk category, possibly less than 2% chance of recurrence over the next 10 years. Since this drug has some nasty side effects, and also has a risk of blood clots and liver disease, I don’t think it’s worth taking. I can live with a 2% chance.

Aromatase inhibitors reduce the amount of estrogen your body produces. Aromatase inhibitors are most commonly used to treat postmenopausal women but can be used to treat premenopausal women who are also taking medicine to shut down their ovaries. This medicine has fewer side effects but often causes bone loss and bone breakage.

Since I already have osteopenia (the step before osteoporosis) and I’ve already had a bone break, this isn’t the drug my medical oncologist recommended for me, and I agree.

To better assess my risk of recurrence, he’s ordered a MammaPrint test run on my tumor (boy that sounds so weird to say: my tumor. Actually I still have a hard time wrapping my head around me having another kind of cancer.). If I fall in the ultra-low risk category, then I absolutely won’t take the estrogen blocker. The juice just wouldn’t be worth the squeeze. If my risk is higher, then we’ll have to talk further about the options. 

My surgeon was also pleased with how I’m healing. I’m typically a fast healer and even though there's swelling he said it's really minimal compared to most. He said the recovery period is six to eight weeks, but I’m OK to work out as long as I don’t go swinging heavy kettle bells or anything.

Next week I see the radiology oncologist to get that process going. She’ll do some sort of mapping using a CT scan to get the locations established, and I’ll get a couple of tiny tattoos that mark where the machine needs to line up. I don’t know how long my radiation treatment will last but generally it’s three to seven weeks, five days a week. There’re some less than pleasant side effects but nothing horrible (although my surgeon did warn me today that my breast will swell from radiation—good to know!), and once that’s done, everything can start healing up.